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TRIBUNE WATCHDOG

SUFFERING IN SECRET:

Illinois hides abuse and neglect of adults with disabilities

Barbara Chyette holds up a picture of her late brother, Loren Braun, a group home resident who choked to death during a supervised outing. (John J. Kim / Chicago Tribune)

By Michael J. Berens and Patricia Callahan

The house had no address; the dead man had no name.

Illinois officials blacked out those details from their investigative report. Nobody else was supposed to learn the man’s identity or the location of the state-funded facility where his body was found.

The investigation was closed as it began, with no public disclosure, and the report was filed away, one of thousands that portray a hidden world of misery and harm.

No one would know that Thomas Powers died at 3300 Essington Road in unincorporated Joliet, in a group home managed for adults with developmental and intellectual disabilities.

Or that his caregivers forced a 50-year-old man with the intellect of a small child to sleep on a soiled mattress on the floor in a room used for storage.

Or that the front door bore a building inspection sticker that warned, “Not approved for occupancy.”

Not even Powers’ grieving family knew the state had looked into his death and found evidence of neglect.

As Illinois steers thousands of low-income adults with disabilities into private group homes, a Tribune investigation found Powers was but one of many casualties in a botched strategy to save money and give some of the state’s poorest and most vulnerable residents a better life.

In the first comprehensive accounting of mistreatment inside Illinois’ taxpayer-funded group homes and their day programs, the Tribune uncovered a system where caregivers often failed to provide basic care while regulators cloaked harm and death with secrecy and silence.

The Tribune identified 1,311 cases of documented harm since July 2011 — hundreds more cases than publicly reported by the Illinois Department of Human Services.

Confronted with those findings, Human Services officials retracted five years of erroneous reports and said the department had launched reforms to ensure accurate reporting.

To circumvent state secrecy, the Tribune filed more than 100 public records requests with government agencies. But state files were so heavily redacted and unreliable that the newspaper had to build its own databases by mining state investigative files, court records, law enforcement cases, industry reports, federal audits, grant awards and Medicaid data.

The Tribune found at least 42 deaths linked to abuse or neglect in group homes or their day programs over the last seven years. Residents fatally choked on improperly prepared food, succumbed to untreated bed sores and languished in pain from undiagnosed ailments.

Other residents suffered forced indignities and loss of freedom, state records show. Some were mocked for their intellectual limitations, barricaded in rooms, abandoned in soiled clothing and deprived of food.

A male group home resident, accused of stealing cookies, was beaten to death by his caregiver. Employees at one home bound a woman’s hands and ankles with duct tape, covered her head with a blanket and left her for several hours on the kitchen floor. For their own amusement, employees at another home repeatedly ridiculed residents to provoke outbursts, a game the caregivers called “breaking them.”

And, all too often, vulnerable residents’ health and safety has been left to unlicensed, scantly trained employees. Front-line caregivers failed to promptly call 911, perform CPR or respond to medical emergencies that resulted in death.

In hundreds of cases, the department allowed employees of group homes to investigate allegations of neglect and mental abuse in their own workplaces, the Tribune discovered. That alliance between group homes and Human Services’ investigative arm, the Office of the Inspector General, is not specifically disclosed in state investigative reports.

Citing patient privacy laws, state officials maintain that the addresses of the more than 3,000 state-licensed group homes are secret. Illinois officials refuse to disclose the enforcement history of any home, even in cases of fatal abuse and neglect.

In contrast, Illinois nursing homes must maintain copies of investigative reports and surveys for public inspection. Additionally, state health officials publish a quarterly report detailing violations accompanied by nursing home names and addresses. There are no similar disclosure requirements for group homes.

In this culture of secrecy, even seemingly benign records get shielded from sight. For example, the Tribune requested a state-funded PowerPoint presentation that included a list of needed improvements to community care programs, including group homes.

The state responded. Except for the word “Recommendations,” the entire slide was blacked out.

Citing the Tribune investigation, Human Services Secretary James Dimas has ordered widespread reforms to improve public accountability and streamline investigations.

“My concern is that too often agencies hide behind their confidentiality statutes, which makes it harder for the public to know what is going on,” said Dimas, who was appointed last year.

Dimas said he will push for legislative changes, if necessary, to allow public disclosure of group home enforcement histories.

The shift in Illinois from large institutional facilities to less costly residential homes reflects the philosophy that these individuals, if supported, will lead fuller lives in the community, and more than 11,400 now live in group homes statewide.

Known as Community Integrated Living Arrangements, or CILAs, these homes accommodate eight or fewer adults in ordinary apartment buildings or houses.

The Arc of Illinois, a statewide advocacy group, reports that hundreds of people with disabilities have successfully transitioned into group homes in recent years. In 2011, a lawsuit brought by individuals who wanted to leave state-funded facilities resulted in a court decree that has forced Illinois to move more people into community settings.

State officials have touted group homes as a preferred option, citing cost savings that can be used to fund more community care. The annual cost of care for an institutionalized resident is about $219,000 compared with $84,000 at a group home, according to state records.

But Illinois has not increased reimbursement rates for group home staff wages in nearly nine years, leading to what industry leaders say are catastrophic conditions in which even the best operators are struggling to provide basic care. Illinois ranks among the five worst states for adequately funding community options, according to federal reports and studies by advocacy groups.

Shirley Perez, who directs a family advocacy program for the Arc of Illinois, said: “Some of the phone calls I get from families are that they are afraid.”

Powers, born with a condition that led to brain damage, spent decades inside state institutions, unable to talk, unpredictable in behavior. When state officials promised him a better life in a real home and told his family he’d gain independence, Powers said yes the only way he knew how. He giggled.

But this was not the life that Powers found. Nor did thousands of other adults with developmental and intellectual disabilities, left to the mercy of a system designed to be invisible.

Joe Powers talks about his late son, Thomas, at his daughter Kathy’s home in Aurora. (John J. Kim / Chicago Tribune)

Failures of care

In one Will County group home, state records show, a caregiver left a frail woman alone in the bathroom after filling the bathtub with water, unaware that it was scalding because a maintenance worker forgot to install a temperature-control valve. The woman tumbled into the tub and was severely burned. The Trinity Services caregiver put the woman to bed, later pulled socks over her peeling, bleeding skin and didn’t seek medical help for more than an hour. The woman died days later.

At a Springfield home owned by Sparc, a caregiver forgot to give a man his anti-seizure medication before sending him to a day program in 2013. Rather than deliver the pills, investigators found, the caregiver told a colleague to throw them into the trash. The man suffered a major seizure, turned blue and was treated at a hospital.

A caregiver at a Macomb group home managed by Mosaic allowed a man to sleep with a stuffed snowman even though he had been diagnosed with pica — a disorder that compels people to eat nonfood items — and had a history of consuming stuffing, according to inspector general records. In 2012 the man tore open the snowman, ate the filling and choked to death.

In case after case, group home businesses have delegated frontline care to inexperienced caregivers with negligible training, a cost-cutting combination that has led to harm, the Tribune investigation found.

Indeed, when the newspaper reviewed more than 200 substantiated cases of abuse and neglect, it found the vast majority of injuries and deaths are linked to inadequate staffing levels and failure to closely monitor fragile residents. Records show caregivers trying to cover up mistakes, failing to understand dangers of missed medications and underestimating the complex nature of disabilities.

Sparc’s chief operating officer, Ryan Dowd, said his company fired the caregiver who directed a colleague to throw out anti-convulsant medicine, added more surveillance cameras in its group homes and switched from paper to electronic medication records so a nurse can better catch mistakes.

Nancy Davis, a Mosaic vice president, said her organization dismissed the caregiver who allowed the man to sleep with a stuffed snowman, hired outside behavioral experts to address the needs of residents with pica and retrained caregivers on how to protect those individuals.

Caring for adults with profound intellectual and developmental disabilities can be challenging. Some have the strength of a weightlifter with the impulsiveness of a child. In the blink of an eye, they can find themselves in crisis.

Yet caregivers in group homes earn an average of $9.35 an hour, according to the Illinois Association of Rehabilitation Facilities. That wage is below the federal poverty level for a family of three. Low pay is a contributing factor in high staff turnover — more than 40 percent annually in some homes.

“Staff turnover — it’s like a cancer that affects care,” said UCP Seguin of Greater Chicago CEO John Voit, who has worked in the industry since the 1970s.

Group home executives complain that inadequate state funding has not allowed the industry to increase entry-level pay or raise existing salaries to retain skilled supervisors. They say caregivers can earn more money in many other industries, citing the experienced employees who recently resigned to take higher-paying jobs at Amazon warehouses.

To fill vacancies, business operators said they have turned to workers whose backgrounds would have disqualified them from jobs in the past.

“You’re scraping the barrel,” said Little City Executive Director Shawn Jeffers, whose agency’s services include group homes for adults with disabilities in the Chicago area. “I have some folks who do some really dumb stuff.”

Responding to what group home owners call a staffing crisis, state lawmakers in both houses this summer overwhelmingly approved $330 million in funding to boost pay for caregivers. But Gov. Bruce Rauner vetoed the measure in August, citing a lack of state funds.

The Tribune also found that the group home industry is exempt from basic staffing standards required elsewhere in the state’s long-term care system.

Nursing homes, state institutions and other extended-care facilities are required by law to employ on-site registered nurses who can detect and react to sudden changes in patient conditions. Even low-level employees must be state-certified aides who update skills through continuing education.

Group homes are not bound by these requirements. Many group home residents are not examined by a licensed nurse for weeks at a time, sometimes for many months, state enforcement records show. Instead, registered nurses often work from remote locations and supervise dozens of residents over the telephone.

Some unlicensed workers also are allowed to pass out prescription medications — a practice prohibited by law at nursing homes and state-owned facilities.

These and many other relaxed policies place group home residents at greater risk of undetected complications.

Few daily activities underscore the dangers of thin staff or the critical role of competent caregivers like the simple act of eating.

In 2014, a UCP Seguin group home resident attending the company’s day program in Cicero choked to death on a marshmallow that a caregiver handed out as a treat. The victim had dysphagia, putting him at high risk of choking, and staff were supposed to give him only pureed or finely chopped foods, the inspector general found. UCP Seguin CEO Voit said his organization, one of the state’s largest group home providers, has retrained staff on choking risks and revised safety protocols.

That same year, a man at a Trinity Services group home in Peoria fatally choked on a cheeseburger, carrots and applesauce when a caregiver stepped away. The victim’s medical files warned he often swallowed food too fast and needed close supervision, but staff members were not properly trained about his special needs, state records show.

In response, Trinity Service officials said, they created a training manual for each group home that details how to monitor residents with diet restrictions and choking risks, including pictures that illustrate how to chop or puree food properly.

For Loren Braun, death came from a McDonald’s hamburger and an inattentive caregiver who had been hired specifically to watch him.

At 61, Braun had no teeth and couldn’t wear dentures. Born with developmental disabilities and diagnosed with schizophrenia, he had lived since 1997 in a North Side group home managed by Anixter Center.

Braun had a history of choking. His food had to be soft and cut into tiny pieces, and someone had to coach him at every meal to eat slowly and drink water between bites.

Braun’s sister, Barbara Chyette, tried to protect her younger brother as best she could.

Loren Braun, who had no teeth and couldn’t wear dentures, choked to death on food during an outing away from his group home. (Family photo)

As a former social worker at an Ohio psychiatric hospital, she saw the advantages of a small group home but feared that staffing levels were often inadequate for high-risk residents.

Tapping a family foundation set up by her late father, a postal worker, she donated money to pay Anixter for an extra caregiver to shadow her brother three days a week. She also donated a van to the home for community outings.

In November 2014, caregivers loaded Braun and four other residents into that van for grocery shopping, haircuts and lunch at a McDonald’s. After returning to the group home, a caregiver discovered Braun unconscious in the back seat.

A Chicago Fire Department paramedic reported that he removed “almost an entire hamburger” from Braun’s mouth and airway but was unable to revive him. He had choked to death.

State investigators cited his personal caregiver for egregious neglect. In a wrongful death suit, Chyette alleges that Anixter failed to address his choking risk, served her brother unsafe food and didn’t protect him from neglect. Anixter executives declined to comment.

“Loren was like a baby,” Chyette said. “Like you would have to be with a 2-year-old or 3-year-old — that’s the kind of supervision that clients like Loren need. And the system does not provide that kind of supervision.”

The attacker next door

Illinois group homes were first licensed in the 1970s as state-funded community options for adults with intellectual and developmental disabilities, the beginning of a civil rights movement to empty large institutions and nursing facilities.

This shift offered freedom and independence to scores of people with disabilities who were inappropriately consigned to institutional care. But as state downsizing continues, group homes are also destinations for individuals with a history of profound problems, often compounded by mental illness, requiring round-the-clock supervision for their safety and the safety of other residents.

A majority of group home businesses report that they cannot afford to provide that level of protection, according to industry trade groups.

Fragile individuals with disabilities sometimes live alongside those who have a history of violence or sexual aggression, a risky mix that has led to injury and death, state records show.

Group home owners are not required to report resident-on-resident assaults to the inspector general’s office unless someone suspects that neglect was a factor, according to state law.

But law enforcement and state investigative reports reveal a troubling pattern of violence at group homes since 2010, including three homicides.

At a Trinity Services group home in Peoria in 2010, John Vogel, 45, was fatally beaten by a resident whose acts of violence had sent two employees and two housemates to the emergency room months earlier, according to inspector general and coroner records.

At a Bolingbrook group home managed by Individual Advocacy Group, Eduardo Formanski, 30, suffocated after another resident, who weighed nearly twice as much as he did, lay on top of him during a fight in 2011, according to police, court and medical examiner records.

That same year, Tramayne Yarbrough, 35, died of head injuries after a housemate pushed him down the stairs of a Palos Park group home operated by St. Coletta’s of Illinois, according to medical examiner and inspector general records. The assailant had a history of physical aggression and had pushed someone else down the stairs about two months earlier, the inspector general’s office found.

Responding to questions about the Vogel homicide, Trinity Service officials said they had provided extensive behavioral therapy to the resident responsible for the attack. Afterward, they said, group home employees received enhanced training to better deal with aggressive residents.

Addressing the death at the Bolingbrook home, an official for Advocacy Group said it was the only fatal incident in the group home’s 17-year history. Attempts to reach St. Coletta’s of Illinois for comment were unsuccessful.

Residents have also been victimized sexually by other residents, records show.

At a West Side day program operated by group home provider Habilitative Systems, a 33-year-old man had a behavior plan that addressed his history of sexually inappropriate behavior, including “engaging in sexual activity without consent.” The staff was supposed to make sure he remained at least 3 feet away from program participants, and his care plan called for employees to accompany him even to the restroom.

But in July 2010, the man wandered away unnoticed and entered an unlocked restroom where he allegedly persuaded a 27-year-old man to perform oral sex, according to a state report that cited a witness account by a third man who entered the restroom and discovered the pair.

An investigator with the inspector general’s office termed the sexual act consensual, even though the younger man had profound disabilities, wasn’t able to speak and “could not provide any information for this investigation.” The office did cite the business for neglect. An official for Habilitative Systems declined to comment about the case.

State law allows group home providers to mix defenseless residents with those who have histories of violence as long as businesses maintain adequate supervision and staffing.

Born with cerebral palsy and excess fluid in his brain, Stanley has the cognitive capacity of a 2-year-old, his mother said. Spastic quadriplegia restricts movement of his arms and legs, so he can’t propel his own wheelchair. At a Berwyn group home managed by UCP Seguin, he was fully dependent on the staff.

Colleen Stanley didn’t know that her son’s bedroom was next to that of a man who not only had an intellectual disability but also was diagnosed with intermittent explosive disorder. A UCP Seguin employee later told police that Stanley’s housemate was prone to episodes of unprovoked explosive violence and had “insurmountable strength.”

In October last year the housemate walked into Stanley’s room during the pre-dawn hours and nearly pummeled him to death while he lay in bed — beating him repeatedly in the head with a fire extinguisher, a television and a picture frame before stabbing his face with glass from the broken frame, police records show. Stanley’s swollen face was so covered with blood that first responders could not see his eyes.

The sole UCP Seguin caregiver on duty that night — a woman alone in the house with seven disabled men — told police she tried to intervene but Stanley’s housemate became more violent, and she was afraid he would attack her.

No charges were filed against Stanley’s housemate, whose psychiatrist told police the man could not comprehend his actions. Instead, Human Services admitted him to a state-run institution for individuals with developmental disabilities, police records show.

Stanley, who had to undergo multiple reconstructive surgeries on his face, no longer lives at the UCP Seguin group home. His family is suing the provider for failing to protect him.

Citing the lawsuit, UCP Seguin’s Voit declined to comment on the specifics of the case. In a written statement he said that, in general, when a person is harmed, his organization figures out the causes, retrains staff, revises safety protocols and disciplines employees to reduce the likelihood of recurrence.

“Ultimately, however,” the statement said, “there are some occurrences or encounters that can neither be predicted nor prevented, even with the best of training, protocols and processes.”

In an interview before her death from breast cancer in August, Stanley’s mother said the system has to change.

“You can’t put someone that’s violent in the same house as someone that can’t even get out of his way,” she said.

A suspicious death

Even as a toddler, it was clear Thomas Powers would need a lifetime of care.

He never learned to speak, use a toilet or hold a spoon. He could walk, even run, but he was awkward and crashed into walls and furniture. He couldn’t comprehend simple gestures or words, and at times he had trouble recognizing his own family.

But he loved to have his hand stroked and his back patted. And he seemed most happy when traveling in a vehicle and staring out the window, family members said.

Thomas Powers as a child, front row, second from right, and as an adult with his sister Kathy at her home. (Family photos)

Powers, one of nine children, had a rare inherited disorder – phenylketonuria, which can cause severe intellectual disability and medical problems. The condition is readily detected and treated today, but the test did not exist when he was born in 1960, and his disease went untreated as a child.

His father, Joe Powers, 83, said the family made the agonizing decision to institutionalize Thomas at age 6, when he had become an oblivious danger to himself and others. In one of many frightening incidents, he held an infant sibling above his head and made a throwing motion.

Thomas Powers spent four decades in state institutions, but in 2008 state officials pressured the family to move him because of planned downsizing at his facility, according to one of his sisters, Kathy Powers.

She said they promised he would receive more individualized care. A state contractor then steered them to Trinity Services, the state’s largest operator of group homes for adults with disabilities.

Two years later, however, Trinity Services officials reported that Thomas Powers had become too much to handle. Caregivers complained that he was a whirlwind of motion and mayhem, running from kitchen to bedroom, tossing pans from the stove, breaking lamps, drinking water from the toilet, sometimes stripping naked to express displeasure.

“He was just out of control,” a Trinity Services supervisor later said in a court deposition. “He was like an animal.”

To better control Powers’ behaviors, Trinity Services officials transferred him in May 2010 to another home, a 2,100-square-foot ranch house on Essington Road in unincorporated Joliet. Following the move, most of his daily activities would take place inside.

Thomas Powers, born with a condition that led to brain damage, was found dead in 2010 in a group home in unincorporated Joliet, three days after being transferred from another group home. He was 50. (John J. Kim, Chicago Tribune)

Canceled were Powers’ weekday trips to a community day program where he had participated in arts and crafts projects with dozens of other people with disabilities. There would be no more of his favorite activity, riding in a transport van.

When Powers arrived, three other men were living in the house, state records show. None of them should have been there.

Two months earlier, a Will County building inspector had posted a “not approved for occupancy” sticker on the door after determining that Trinity Services had converted a residential property into a group home without proper permits and safety improvements. County officials charged that Trinity Services ignored that order to vacate the home.

While Powers’ bedroom was being renovated, he slept in a cramped room jammed with boxes of other people’s belongings, according to state records. He should have never been left unsupervised with loose objects, medical records show, because he suffered from pica and indiscriminately stuffed items in his mouth.

On his third day in the home, he was found dead.

His caregiver told state investigators that Powers, wearing pajamas, had rested through the night on a fully assembled bed, according to police and court records.

But sheriff’s deputies found Powers dressed in blue jeans and belt, lying on the floor next to a mattress so stained that it was hauled away as garbage. The room was cluttered with ripped-open storage boxes, and a box spring with built-in bed frame leaned against a wall.

Thomas Powers was living in a group home in unincorporated Joliet in 2010 when he was found dead lying next to a stained mattress in a cluttered room used for storage. (John J. Kim / Chicago Tribune; Will County sheriff’s office)

The caregiver first told deputies that she found Powers with a plastic bag “laying over his face, covering it.” She later changed her description, saying “it was like a sheet of paper.”

Dr. J. Scott Denton, who conducted the autopsy for the Will County medical examiner’s office, ruled the cause of death undetermined.

But later, in a deposition, Denton testified that “it’s more likely than not that something unnatural happened,” citing Powers’ suspicious bruises and cuts, the plastic bag or sheet, the room in disarray and other unusual circumstances.

Powers’ family, who maintained close contact with group home employees, filed a wrongful death suit and reached a confidential settlement last year.

“We will never know what happened for sure,” said Kathy Powers. “But something wrong happened.”

Trinity Services Executive Director Art Dykstra, a former state director for mental health and disability programs, said Powers thrived for years without incident but experienced sudden and unexplained weight loss and health complications in the months before his death.

Caregivers transferred Powers to the Joliet home because it had fewer residents than the home where he lived and might offer a calmer environment to counter his increasingly disruptive behaviors, he said.

Most of the building code violations in the Joliet home represented renovations that were underway or completed without proper permits, Dykstra said.

“Everyone at Trinity Services feels terrible about this death,” he said. “We’ve tried our hardest to help people with complex needs like Thomas.”

Records show that the Office of the Inspector General took five years to close the case, issuing its report after the Powers family settled its civil suit with Trinity Services.

Investigators cited the business and the caregiver for neglect, noting that residents were placed in a home with code violations and that Powers was forced to sleep on a mattress placed on the floor in a room full of debris. But the state took no further action against Trinity Services.

Under Illinois law, the inspector general’s office is required to send a notification letter to families or guardians if neglect or abuse is found.

But members of Powers’ family said they were unaware of the state’s investigation until contacted by the Tribune. Inspector General Michael McCotter acknowledged that his office had failed to notify them.

Last summer, the Powers family received an apology from McCotter in the mail.

Illinois has been moving toward a group home model for decades. Here are some major factors behind that transition:

Beginning in the 1970s, Illinois downsized state-funded institutions because scores of people were inappropriately confined there.

In the late 1980s, state officials created a special license for group homes that provide care for eight or fewer adults with intellectual and developmental disabilities. These homes were designated Community Integrated Living Arrangements, or CILAs. There are more than 3,000 such homes today.

The U.S. Supreme Court ruled in 1999 that people with disabilities have the right to live in the least restrictive setting possible. Known as the Olmstead decision, the ruling also stated that unnecessary institutionalization violated the Americans with Disabilities Act. The decision forced states to fund more community services.

In 2007, Illinois launched the Pathways to Community Living program, a federally funded initiative to transfer thousands of people with disabilities into group homes or other community placements from state institutions or nursing facilities providing long-term care.

In a federal settlement known as the Ligas consent decree, Illinois agreed in 2011 to fund community access for adults with disabilities who lived in private intermediate-care facilities with nine or more beds, and those who lived at home but had sought community services or placement.

Also in 2011, a federal court approved a sweeping agreement — the Colbert consent decree — that required Illinois to fund more community options for Medicaid-eligible nursing home residents with disabilities.

In late 2011, then-Gov. Pat Quinn announced a cost-saving plan to close multiple state institutions and move hundreds of adults with disabilities into group homes. The Jacksonville Developmental Center was closed, but state officials shelved plans to shutter the Murray Developmental Center following a court fight with parents of residents.

THE TIME IS NOW FOR THAT HONEST INVESTIGATION that Jerome Larkin, the Illinois Attorney Registration and Disciplinary Commission and the Supreme Court of Illinois are fighting against. The intimidation of lawyers who pursuant to Rule 8.3 report these outrages has to stop. Reporting corruption should not be considered to be akin to ‘yelling fire in a crowded theater’ and blogs such as the MARYGSYKES blog should be protected – as required by the First Amendment.